Liam and Courtney Rooney watched the announcement with their two-year-old son Luca in their arms, knowing it could change his future.
Luca Rooney is too young to understand the room full of officials and cameras, but his parents do.
As Associate Health Minister David Seymour confirmed a provisional deal that could widen access to cystic fibrosis medicines, Liam stood holding Luca, listening for the words many families have waited years to hear.
“Trikafta and Alyftrek will be available at all ages from the 1st of April,” Seymour said.
For families such as the Rooneys, it was a moment loaded with relief.
“Families that would have waited just such a long time to hear these words… and it’s such a good day,” Liam Rooney said.
Cystic fibrosis is a genetic condition that damages the lungs and other organs. For the Rooneys, it became their reality when Luca was diagnosed just weeks after he was born.
“I got a phone call when Luca was about two weeks old,” Luca's dad said.
“I jumped in the car to drive home and I was crying my eyes out. Halfway through the trip, I was thinking, 'what did [the specialist] actually say? Did he say cystic fibrosis?' I didn’t even know what it was.”
Since then, the Rooney family have lived around daily routines most people never have to consider, from medication and physiotherapy to constantly managing the risk of infection.
“Kids are playing in, like, the pool of water and he wants to go and do that, but we don’t know how long the water’s been there because the stagnant water’s really bad for him,” she said.
“So we kind of have to keep him away and he kind of watches it and he’s like, ‘I can’t go and do it in water'.
“Whenever he eats anything, we have to give him enzymes. You’re calculating everything, making sure he’s getting enough calories,” she said.
“Then there’s the physio every day, the nebuliser, keeping germs away. His brother goes to kindergarten and just like any kid, brings home illnesses.”
Families with few options but to go overseas
Until now, New Zealand’s public funding for Trikafta was restricted to children aged six and over, leaving younger children waiting. Families have previously said the drug could cost hundreds of thousands of dollars a year privately, placing it well out of reach for many.
Cystic Fibrosis NZ says it knew of at least five families who have moved to Australia or further overseas to access the treatment for younger children.
For Liam Rooney, the thought of taking his family and leaving New Zealand was not abstract.
“That was probably the top of the list in terms of the option,” he said, when asked whether the family had considered moving.
Cystic Fibrosis NZ’s Simone Brown said early intervention could be critical, citing evidence of damage occurring very early in life.
“We know that 50% to 70% in studies show that children under the age of six will have on their first CT scans structural and bodily damage,” she said.
“And that’s significant at age of one. So with this kind of treatment, it significantly reduces the amount of damage and all of that will help prolong life.”
Said Liam: “Knowing [Luca] can get Trikafta means we hopefully don’t have to see the worst of what can happen.
“We’ve been told it’s the most transformative drug there’s ever been for this condition.”
Brown described the announcement as a major moment for the community, while acknowledging there were still families without access to suitable treatment options.
Not final yet: Pharmac opens consultation
The proposal however is not yet confirmed.
Pharmac has opened public consultation, with submissions closing at 5pm on Wednesday, February 11. Funding would begin from April 1, 2026 if the proposal was approved.
Seymour said Pharmac still operated within finite budgets but framed today’s move as an example of the system shifting towards solutions.
“We have a Pharmac culture where, yes, there is finite money and yes, Pharmac sometimes has to say no. Thankfully that’s not what today’s about,” he said.
Asked why it took so long to reach this point, Seymour said: “The best time to do this was about three years ago. The second best time is right now.”
Seymour said changes to the process were designed to avoid the delays that affected younger children in the past.
In 2023, he said, decisions around eligibility were linked to medicine approval and timing.
“The change that we’ve made this time is we’ve said, we’re signing a contract with the provider to fund this, whether or not it is consented by MedSafe,” he said.
He said doctors would still be able to prescribe the medicines off-label, “put the trust in the physicians”, and “get the medicine to the children faster”.
Seymour argued that shift also signalled a different relationship between Pharmac and patients.
“Pharmac used to be banging heads with everyone all the time. Now it is collaborating and looking for solutions,” he said.
For the Rooneys, it's not about process. It's about possibility.
A chance that their son can access treatment earlier, and a chance that families like theirs might no longer have to weigh up leaving home to keep their children well.
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